Tuesday, December 31, 2013

We had a really rough night... I am guessing that her eyes weren't dilated anymore at 3 am cause we have been in a fairly good mood... We just played and then slept good from 630 to 9am..her urine was tested again... And it still shows her not concentrating but also showed that she is peeing out her sodium... So because her sodium is low, she is getting 1ml of sodium cloride twice a day... It's in the normal range now cause it was tested again about an hour ago but we will keep her on them for now... One rare disorder of excess urine output is a high fructose deficiency... Although it's only about a 30 percent chance she has this... It's better to rule it out to... This deficiency is associated with liver problems and fluctuating blood levels, neither of which she has, but the biggest symptom is excess output which she does... So to see if she has it.. We have changed her formula to enfamil lipal... Which has no fructose or corn syrup in it... And see if over the next several days if her output will go down... She did have her sweat test done today... They did it on her arms... And used gauze and tape to collect the sweat, and she did sweat really good, and that of course came back negative for cystic fibrosis, which we kinda knew it would..she has started to be weighed twice a day now... We did good this morning with a one ounce gain (8.9), but when she was weighed tonight she lost four ounces making her 8.5... I think some of it relates to the sweat test, but I haven't talked to the doctors yet to see what they think... Her feeding after she was weighed tonight, she had a big vomit spell, so please pray that that was a one time thing... She is already a mystery and I don't want her getting sick on top of it... Happy New Year's Eve everyone... Please be safe... Since we didn't sleep last night... I'm going to be uncool and go to bed early